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Monday, February 25, 2013

The Mind Is A Terrible Thing To Waste…

So I’m not
going to risk it.

I made a
command decision.I am not ready to
expose myself to the risk Rituxan poses to my brain.

If I only
had RA, I would be far less concerned.But because I have both Lupus and RA, I am especially concerned about
the risk of Progressive Multifocal Leukoencephalopathy (PML) – an incurable and
nearly always fatal brain disease.

I know
that with any treatment, there are risks.And maybe I’m naïve to feel that the risks to my liver and kidneys are
one thing, but risks to my brain are another.

I have
accepted the fact that my body doesn’t work right, and I have learned to cope
with that, but the thought of my brain turning to mush is just too much.

In this
chronic illness game and on this chronic illness journey, there are always
decisions to be made, decisions I never expected to be faced with this early in
life or at all, for that matter.

And we
lose pieces of ourselves along the way.Literal
pieces that come from biopsies and blood draws.But figurative pieces, as well.We learn to dissociate during medical procedures.We give pieces away when we give more of
ourselves than we ever thought we would.Like I said I would never do self-injection, and then eventually, I did.The threshold of what you are willing and not
willing to do in the name of health seems to always be slightly in flux.But
there has to come a point, unless you are desperate enough, that you put your
foot down.That you say no, I can’t, and
I won’t.

I’ve
always said that I don’t want to stand in the way of my treatment due to fear.
But I didn’t want to have to worry for as long as I was on Rituxan and for a
significant amount of time after I was off of it that every time I forgot a
word or tripped, that I was literally losing my mind.

To me, my
mind feels like too big of a piece to potentially lose.

And there
is so much falling into place in my life right now, and while feeling good
isn’t necessarily one of them, there’s so much I want to do and
accomplish.And I can’t do those things
without my mind.

Obviously
I know that there are no guarantees.And
no one could tell me for sure that I would or wouldn’t get PML if I took
Rituxan. But PML would be almost completely out of the realm of possibility if
it weren’t for Rituxan.So part of me
felt like if I had the opportunity to prevent it, I should.

And this
isn’t to say that one day it might not be the right treatment for me.I know I’m not functioning at a super high
level right now, but I can get out of bed.And it’s not like if I don’t take Rituxan, I am going to die.So for right now, it’s not the right
treatment for me.

Like I
say, this hasn’t been an easy decision.I’ve vacillated back and forth, back and forth.

I thought
a lot back to the quote from Shelby (Julia Roberts) in “Steel Magnolias”: “I
would rather have thirty minutes of wonderful than a lifetime of nothing
special.”

And I realized
that that’s the opposite of how I feel right now.Was it worth trying to get through everything
happening in the next two and a half years to potentially not get any more time
than that?My answer is no.It has to be.There’s so much in the coffer that I could explode, but I can’t share
some of it just yet.

The big
thing is that this is the first time since I got sick that I’ve looked into the
future, really looked into the future, and saw something there besides
illness.I know that sounds sad, and
maybe it is, but it’s also the most hopeful I’ve been in a long time.And I didn’t want to take a chance of being
robbed of that future for something that my doctor wasn’t 100% sure was the
best option for me.

I guess if
you go with your gut, you can’t make the wrong decision.And in this case, both my head and heart were
sending me signals that this wasn’t the right choice for right now.

The first
infusion was scheduled for next weekend, and the next for two weeks after, like
it’s supposed to.But I cancelled
them.And oddly, I feel a hell of a lot
more empowered for making the decision not to than I did for making the
decision to start them in the first place.

So I’ll be
starting Tacrolimus in the hope that, that will provide some relief of both my
Lupus and RA symptoms.And in my view,
the biggest risk for me with Tacrolimus is that it won’t work.And if that does happen, I’m no worse off
than I am right now, before I’m on it.

And maybe
Rituxan will one day find itself back on my treatment plan.But I don’t like the idea of just picking
random drugs from a list of those available.I want to make sure that what I try is not only worth the risk, but also
makes sense based on my body’s past response other medications.

My other
issue is that – while the risk of PML is about .001, which is undoubtedly very
small – I’ve been in the .001 before.I’ve had things happen health-wise that for all intents and purposes
shouldn’t have happened.So when told
that the odds are .001, it’s easier for me to focus on the .001 than the other
.999. Because I want to be avoid being in the .001.I have too much happening right now, and I
need my brain to do it.

1 comment:

We all have different lines in the sand about what we will and will not risk. And when your body is not terribly reliable, your mind takes on extra importance. You've thought this through and have a really solid reasons not to play this particular lottery. Congratulations on finding the hope and strength to believe in your future!

About Me

In April 2008, at the age of 22, I was diagnosed with lupus and rheumatoid arthritis. The Getting Closer To Myself blog is about a lot of things in my life, but focuses on my experiences with illness, in the hopes that my story will help others. I also have several other blogs that I maintain about various other aspects of my life.